Ostomies are lifesaving and can either be a temporary tool that gets someone from surgery to survivorship, or a permanent part of survivorship. According to the United Ostomy Association of America, Inc., “Between 725,000 and 1 million Americans are living with an ostomy, and approximately 100,000 new lifesaving ostomy surgeries are performed annually in the United States.” Whether yours is temporary or permanent, loved or loathed, we have tips to help you enjoy life outdoors with an ostomy.
What’s an Ostomy?
The National Cancer Institute (NCI) defines an ostomy as, “An operation to create an opening (a stoma) from an area inside the body to the outside.” An ileostomy (an opening into the ileum, part of the small intestine, from the outside of the body) and a colostomy (an opening into the colon from the outside of the body) are types of ostomy connected with colorectal cancer.
When you have a tumor that needs to be removed, it may require radiation first. This is an intense but effective treatment that may cause effects such as fatigue, diarrhea, or a sunburn sensation or feeling in the area being treated-and that’s just on the outside. In addition to the non-visible internal effects of radiation, sometimes tissues also become more delicate over time.
Why does this matter? When your surgeon operates to remove your tumor, they often must reconnect tissues within the colon and/or rectum. Sometimes those recently radiated and now operated on tissues are too delicate to reconnect right away, and your gastrointestinal system needs time to heal: This is where an ostomy enters your treatment plan and helps with recovery. Your surgeon may advise that you need a temporary ileostomy as part of your healing process.
For more extensive information on ostomies, be sure to check out our All Things Ostomy webinar with Joanna Burgess, BSN, RN, CWOCN, and her follow-up Q&A blog, as well as our Life with an Ostomy Podcast. The United Ostomy Association of America, Inc. website is also a great resource for support, information, tips, and resources.
Walking and Hiking with an Ostomy
Ryan Vieth, stage IV survivor, and Fight Colorectal Cancer Ambassador for the class of 2023, hails from Denver, Colorado, and is the Climb leader for the August 7, 2022, Climb for a Cure in Bailey, Colorado.
In September 2019, Vieth was diagnosed with stage IIIc rectal cancer at age 47. He suffered a perforation of his upper colon in June 2021. The perforation caused waste to spill into his body, and within 48 hours, Vieth was fully septic. His doctors told him he was three to four hours away from dying. He had four blood transfusions and doesn’t remember 10 days of his life. Vieth awoke with seven wound sites so deep that in order to heal, he was sent to a wound treatment facility where he had to lie face down for six weeks. Also as a result of his colon perforation, Vieth ended up with a permanent ostomy.
When Vieth was finally able to resume treatment, the cancer in his rectum was gone, but it had moved to four tumors in his lungs. As of January 2022, Vieth, now a stage IV survivor, is stable and is receiving maintenance treatment, which is lower doses of chemo every other week. He has been able to tolerate this with little side effects.
Vieth is excited about this summer season. It’s his first summer since being diagnosed where he will be able to fully get out and participate in hiking the trails and mountains – and camping – again.
With his upbeat and positive perspective, Vieth doesn’t let his ostomy slow him down or keep him from participating in all the summer activities he enjoys.
Ryan Vieth's Top 5 Tips for Being Outdoors with an Ostomy
Vieth’s shares his top 5 tips on being active outdoors with an ostomy:
- Empty your ostomy as often as you can. I find when my bag gets too full, it will pull on the adhesive connection on my stomach, which can cause a leak if I wait too long before emptying it.
- Consider your level of activity, and the amount of heat and sweat you will be experiencing. Heat and sweat can contribute to the seal loosening (particularly if you are like me and don’t have six-pack abs!)
- ALWAYS have a backup of ostomy supplies. I have a small bag I keep with me that has extra ostomy bags, wafers, rings, scissors, and medical tape. I also keep some flushable wipes and waste bags with it as well. You may want to consider adding ostomy paste to your wafer if you are doing heavy activity. Ostomy paste can help to prevent any minor leaks.
- Think about using medical tape or ostomy extender strips. These supplies help keep leaks from happening when you’re engaged with heavy activity. I use these on days when I know I will be highly active outdoors.
- Use a belt, extra tape, or cover on your ostomy if you’re doing water activities. These items will help keep your ostomy pouch and supplies from breaking down prematurely. Chlorine and saltwater can affect the length and durability of your pouch and supplies. I have a Stealth Belt® made for activity, and it helps keep my ostomy bag stable and provides extra protection. Stealth Belt also has a water activity specific belt made of neoprene.
Overall, Vieth says having an ostomy does not require additional care or time in the summer months. However, Vieth says ostomies do require additional thought and consideration for the environment and temperatures. For summer, Vieth suggests that people with ostomies be aware of water activities and heavy activity in relation to how long you have had your bag on. He suggests if you plan on heavy activity or being in the water for an extended period consider putting on a new pouch before activity and then perhaps after the activity.
When he first got his ostomy, Vieth felt self-conscious about the smell and wondered if others could notice it. Additionally, because his ostomy is higher on his descending colon than other people’s, he was worried about how it looked. Ultimately, he came to realize that he was being paranoid most of the time when it comes to smell (he uses deodorizer and lubricant in his pouch), and that no one notices the pouch underneath his shirts as much as he does.
He understands that people become hesitant or frightened when thinking about life with an ostomy, but Vieth says he feels tremendous freedom now that he is active again. A benefit of an ostomy is that he no longer worries about accidents or issues. Vieth says, “Having the ostomy bag makes it so I can go to work meetings, go out to restaurants or events, and most importantly to me – go camping! – without being worried about whether I can make it to a restroom or have to deal with a mess. I joke with my wife that I never have to worry about sitting on a nasty outhouse toilet ever again!”
If you’re concerned about humidity and want to extend time between pouch changes, please check out the United Ostomy Association of America, Inc. summer tips blog post, so you can enjoy being outdoors with an ostomy.
Climb for a Cure for Colorectal Cancer
Vieth is excited to host the Bailey, Colorado, Climb for a Cure location, which is about an hour and a half from where Vieth lives. Mount Bierstadt is one of the 14ers, and Vieth is thrilled to host a Climb there as he currently has four 14ers under his belt, and his son has 12. “Bierstadts is probably one of the two easiest 14ers to climb,” Vieth said.
Vieth wants people to come out, participate, fundraise, and have a good time. He wanted a Climb that challenges people, but not so difficult that they would be intimidated or not want to participate.
Hosting a Climb is bringing together everyone Vieth loves doing what he enjoys – spending time being active and outdoors. He can’t wait to have family and friends from across the country converge on Mount Bierstadt to Climb for a Cure and raise funds to support Fight CRC’s Path to a Cure for colorectal cancer, as they empower and inform patients while driving policy change and breakthrough research.
Can’t travel to Mount Bierstadt to Climb for a Cure in Bailey, Colorado? We’ve got you covered! Find a Climb near you!
Swimming with an Ostomy
Did you know that you can swim with an ostomy? Just make sure your pouch is properly sealed.
7 Ostomy Tips from Colorectal Cancer Survivors
We asked colorectal survivors and loved ones for their summer tips. Here’s why they had to say:
“My daughter loved swimsuits that were blouson. She also trained her stoma so she knew what time it would act, so she could wear just a cover plug.”
–Jane Thorn
“Ostomysecrets.com has wraps for active life. I had a bathing suit bottom from there that had a spot for the ostomy bag, too."
–Melissa Zurawaski
“My ostomy nurse and oncology PT gave me a great website, me+
–Judy Caswell, which is an ostomy resource. It gives suggestions and exercises.”
, which is an ostomy resource. It gives suggestions and exercises.”“I don't do anything special. I just use a convex wafer and barrier wipes. I've been able to get an average of 10-14 days wear out of my wafer. This includes swimming, tubing, other boat sports, and horseback riding. I use Hollister bags and wafers.”
–Stacy Mazza
“I wear a miracle suit, one-piece bathing suit. It's thick enough to camouflage the ostomy bag, but not so tight it would affect any output in the bag. As far as any other activities – I don't do anything special in preparation. I just make sure I have a Ziploc® bag with ostomy supplies in it with me – and then I take off and do whatever I want to do. No special belts, or anything. You'll learn as you go and have these experiences.”
–Kristi Holcomb
“I don’t do anything but wear my appliance. I can swim, bike, lift, walk (I used to run). My ostomy is located below my belt line so my swim trunks/workout shorts naturally cover it."
–Michael Holtz
"I use a Coloplast Sen-sura® Mio two-piece closed pouch and a two-piece bathing suit for the beach. I did body surfing and when I went to check and change, the pouch had sand and ocean water in the bag; however, no leakage, and I was able to keep the wafer and keep on going!"
–Mimi Pineiro
Additional Ostomy Resources
To learn more about ostomies, visit United Ostomy Association of America, Inc. (UOAA). UOAA is hosting a virtual symposium and invites you to join them Saturday, August 13, 2022, for a virtual interactive day of education and community building. The virtual symposium will include a keynote address by a comic living with an ostomy, inspirational speakers, concurrent educational sessions, general sessions, as well as opportunities to connect with fellow attendees and our sponsors. Session topics will include sex and intimacy; peristomal skin issues; what’s new in the ostomy world; advocacy; travel; nutrition; and more! Speakers include David E. Beck, MD, FACS, FASCRS, Clinical Professor of Surgery at Vanderbilt University, Nashville, Tennessee, and Neilanjan Nandi, MD, FACP, Associate Professor of Medicine and Director of the Center for Inflammatory Bowel Disease at Drexel University College of Medicine. The virtual symposium is from 10:30am-5:30pm ET. Learn more and register for the event.
When you are prepared mentally and physically, you can enjoy all the beauty of nature with peace of mind. Be sure to join us for Climb for a Cure, the weekend of August 6-7, 2022. Climb for a Cure is an opportunity to heal and fight alongside a community of champions. No one fights alone. Climb for a Cure raises funds to support our Path to a Cure for colorectal cancer, as we empower and inform patients while driving policy change and breakthrough research. Be sure to sign up before July 22, 2022! If you are unable to participate, you can still donate.
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